Friday, February 11, 2011

We can see the light at the end of the tunnel....

Noah is doing extremely well. Beside him not tolerating feeds and a fever 2 days ago, we are getting so close to the end of this stay. This Tuesday will be exactly 4 months. **sigh**
Noah is on a regular nasal cannula now. His flow rate is a half a liter! The other day we actually had him off the O2 for about 12 or so hours and he did great! He would dip to the mid 80's and even lower when he became agitated, but for the most part he stayed above 90! This is HUGE! We are still going to be going home on O2 but at least he can have long breaks from it during the day. And as he grows and gets stronger, who knows, he could be totally off O2 by the end of the year maybe a little bit longer.
The discharge nurse came by today. She wanted to make sure she had all the right information for all his medical equipment and supplies we will have when he DOES come home. I can't wait for the day when he will not need ANY of it!
His feeds are the biggest struggle now. He will tolerate the formula for a few days and then start vomiting all day and night. We switched him to pedialyte for a couple days and he stopped vomiting... then back to the formula. Again, vomited all day and night. Back to pedialyte and today we are trying half strength Pediasure. They had had him on Neocate, which is supposed to be the most gentle formula out there, but I don't think it was sitting right with him. So hopefully him being back on his normal pediasure will work again. Please say LOUD prayers for this! We need him to show good consistent weight gain for us to be able to go H.O.M.E.
Since he has been vomiting so much lately, it has caused him to have diarrhea so I think they are going to test him for c-dif. :( That means isolation for a few days. But so far they have not tested him yet. We shall see.

Man, oh man. I am just drained from this stay. My body aches all over and I am SO ready to have our life at home back! It is time for Noah to come home! I want to end this update with good thoughts though. I am SO grateful for the family and friends that God has placed in our lives. We have so much support it is unbelievable! I am so very thankful for my fellow heart families. Together we encourage each other and give each other hope. And I thank God for the sweet smiles I am receiving from my Noah. God promised to give him back after all this and he has held true to that promise!

1 comments:

Amy said...

This is wonderful news!!!!! God is so good!!!!! Now sounds like that little boy just needs to keep his food down =) Have they checked him for a lactose intolerance? Seems I remember hearing about a baby having all kinds of problems. Then they found out the baby was lactose intolerant. Switched from breast milk to a lactose free formula and viola she was doing tons better. We'll keep praying.

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Welcome to Noah's blog! We thank you for following us on our God-led journey and thank you for all your thoughts and prayers! Noah was born June 22, 2009 with many anatomical birth defects and underwent his first major surgery when he was just 4 days old. He has been in and out of the hospital since day one and has had a total of 4 major surgeries to date, with his latest one being the most extreme and difficult - his first open heart surgery on November 4 and December 17th, 2010. He is a warrior and this is his journey...
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He is getting so BIG!!!!

He is getting so BIG!!!!
Getting a short break from his O2 :)

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